Rare Community Profiles: A Hidden Agony: Why James is Shedding Light on Geniculate Neuralgia and its Impact on Daily Life

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Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

A Hidden Agony: Why James is Shedding Light on Geniculate Neuralgia and its Impact on Daily Life

While our understanding of healthcare has expanded, some disorders remain obscured from common knowledge, their symptoms often misinterpreted or dismissed. Among these lesser-known ailments is geniculate neuralgia (GN), a source of persistent facial pain that frequently evades diagnosis. As a result, people affected by GN endure prolonged pain and uncertainty as they navigate a maze of medical consultations in pursuit of an accurate diagnosis and effective treatment. 

Beneath the pain and lack of diagnoses lies a broader issue: the pervasive lack of awareness. This not only makes it more difficult to reach diagnosis and intervention, but also perpetuates the isolation experienced by those grappling with these conditions. 

James, a hydrologic technician with the U.S. Geological Survey, decided to share his experiences with geniculate neuralgia to advocate for heightened awareness and unravel the complexities of living with a hidden condition. 

By advancing a broader conversation around geniculate neuralgia, James hopes to equip people with the tools, knowledge, and support to maintain hope even in the face of pain. Through his story, we recognize how imperative it is to bring these conditions out of obscurity and into the forefront of awareness and understanding.

A Shockwave of Pain

In 2014, James was fourteen years old and just started his freshman year of high school. He was excited about the future, ready to begin thinking about where life would take him. 

Then, out of nowhere, he was hit with sudden, excruciating pain around his ear and face. Looking back, James explains:

“I had been attacked by a dog when I was eight on the same side of the face where the genicular nerve is and had to get stitches in my head. I’m not sure if that had something to do with developing geniculate neuralgia. At the time, all I knew was that I had sharp, shooting, localized pain.” 

His pain episodes lasted anywhere from 30-60 seconds at a time, reaching a level 10/10 in terms of how debilitating the pain was. James never knew when the pain would hit. His triggers were innocuous—swallowing, turning his head. It became more and more difficult to function. 

Eventually, his pain worsened to the point where James was hospitalized. Doctors treated him with opiates, which he later had to wean off of. 

Yet after that, the pain seemed to subside. For four years, James’ pain went away. Distracted with school, and preparing for his eventual college career, James pushed his memories of pain to the side. 

It wasn’t until 2018, when James began his first year at the University of Virginia (UVA), that the pain suddenly returned with a ferocity James did not expect. His fall semester became marred by intense facial and ear pain. While he considered hospitalization, James first pursued care with the UVA Pain Management Center and his primary care physician. 

Doctors prescribed Lyrica. It dampened the pain. However, James made the decision to withdraw for the semester and take some time off. 

His pain once again worsened in 2020. James shares:

“That summer, I had flare-ups worse than I ever had before. I took Lyrica as prescribed, but the pain returned and I had the worst, most severe, and most excruciating pain that I’ve ever felt over an entire month. My pain episodes were eight to twelve minutes long. I was in constant pain and had to take an entire semester off. My mental health also suffered, and I found myself dealing with heavy depression and anxiety.” 

Once again, James ended up in the hospital searching for answers. Six years after his pain had originally begun, James was finally diagnosed with geniculate neuralgia. 

What is Geniculate Neuralgia? 

Also known as: Geniculate ganglionitis; Nervus intermedius neuralgia

Neurosurgeons of New Jersey explains that geniculate neuralgia is:

“A very rare nerve pain disorder that can be incapacitating for those who suffer from it. This disorder occurs when the nervus intermedius nerve, located within the skull, is compressed by a nearby blood vessel. Because of its complicated location and the fact that it’s a rare disease, geniculate neuralgia can be very difficult to treat.”

People with geniculate neuralgia may experience: 

  • Gradually worsening burning sensations in/around the ear
  • Sharp, stabbing inner-ear pain
  • Pain that feels like electricity or electrical currents 
  • Tinnitus (ringing in the ears)
  • Vertigo 
  • Pain that spreads to other areas of the head
  • A bad taste in the mouth and/or enhanced salivation 

Pain from geniculate neuralgia may be triggered by extreme noise levels, temperature changes, yawning, swallowing, sneezing, or other actions that cause the ears to pop. Some people may experience symptoms without any triggers. 

Treatment options for geniculate neuralgia include pain medications, anti-epileptic therapies, and surgical options such as microvascular decompression, Gamma Knife radiosurgery, percutaneous rhizotomy, or craniotomy. Says James:

“I had the option of doing a craniotomy but, because my MRI results were inconclusive, I opted not to. Instead, my doctors prescribed oxcarbazepine, an anti-seizure medication. It blocks the sodium channels that send pain signals to the brain, which has been very helpful for me. I have very little pain now at this moment.”

Pain Reprocessing Therapy

In addition to oxcarbazepine, James has also undergone pain reprocessing therapy. The NIH explains that pain reprocessing therapy helps retrain the brain to “unlearn” pain signals and read them as less threatening. James shares:

“The pain has really affected me. When I think about my life, pain is the dominant memory. I was diagnosed with PTSD in 2021 and still grapple with anxiety and depression. One reason why I shifted to pain reprocessing therapy was to re-process the old traumatic memories. My body still believes the pain might happen at any moment. Almost every time I swallow, I have this physical and mental response. I hope to quell and look at the pain in a new light.”

Meditation, grounding exercises, running, jiu jitsu, video games, hiking, and spending time outside also help James calm himself—he describes it as “a balance of distraction and mindfulness.” 

Sometimes it is difficult to think about the pain he has dealt with and the situations that brought him to this point. He shares: 

“I do try to be present and in the moment. And having those moments allows me to interact sincerely with people. But sometimes it’s hard when I’m stressed and anxious. It can be challenging to deal with how GN has impacted me. But in the long run, I believe GN has made me become more compassionate, patient, and kinder.” 

Final Advice

For others who are dealing with geniculate neuralgia, you are not alone. Says James: 

“It’s really difficult to have geniculate neuralgia and acceptance is the hardest part. It takes time. You have to give yourself space to process. But when you’re ready, you have people who understand. Find support groups like the Young Patients Committee, a branch of the Facial Pain Association. You’ll find people who you can talk to about treatments, pain, medications, or just positive things in life. Find a pain management center and discover new things you like to do. The best thing you can do is just take it one day at a time.”

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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